About one and a half years before she died, Uzma started looking for an appointment with a palliative care physician close to home. She called a few different palliative care physicians’ offices. The conversations would always go the same way.

“Hi this is Uzma Yunus. I have stage 4 breast cancer. I want to make an appointment with Dr. ABC.”

“Have you been referred to hospice?”

“No, but I know that eventually that’s coming my way.”

“Mmm…I am not sure how to do this. Leave your information with us. We will call you back after speaking to the doctor.”

Uzma was an optimist. She continued cancer treatments almost an year longer than a part of her really wanted to because she thought, “There is a chance that the next treatment regimen might click for me. If that happens, my kids will have me around longer.”Uzma was also a realist like none other. She always tried and hoped for the best but knew, based on her review of the literature regarding stage 4 breast cancer, that she was unlikely to make it past this year.

It is really hard to be an optimist and a realist at the same time. It is even harder to be both and be one who plans ahead. Uzma had changed her cancer care from a nearby cancer center to Northwestern when her local oncologist had made treatment recommendations that were inconsistent with treatment guidelines. On most days, however, Northwestern was an hour drive away each way. She knew that ultimately she would need palliative care/hospice and decided she wanted her palliative care team to be local, not based an hour away.

So she started calling the local docs. The conversations always went the same way as above. No one ever called back. Then she got hold of her internist and asked her help in getting an appointment with a palliative care physician. This finally got her the appointment she was seeking.

The palliative care physician was surprised that she was seeing him while still in active treatment. Uzma saw this doctor 4-5 times in his office. When she was eventually referred to hospice by her Northwestern oncologist, she proudly said, “I already have a palliative care physician. I want to be referred to the hospice for which he works.”

When she began hospice it gave her comfort to already know the physician and I’m sure it helped the doctor to already know his patient.

[Watch this space for more on the hospice experience — something Uzma would have shared with her readers]

9 Comments

  1. Uzma always had a Plan B, or so it seemed. If a physician can have this much difficulty navigating the medical system, it makes you wonder how the lay person is going to fare.

  2. I continue to learn so much from her. It never occurred to me to consider researching palliative care physicians before hospice. But it makes all the sense in the world. Being in control of your steps and choosing your team are critically important to maintaining your own peace of mind.

  3. I know this doctor as Uzma has shared this with me. I worked with him briefly and he is a kind compassionate man. Actually suggested I go into Hospice nursing. I was glad Uzma had such a caring doctor.

  4. Uzma 🌹 I will never forget you!! I’m living with MBC since 2016. I have a young son and I feel terrible because he is suffering everytime I have a chemo… 🌹🌹🌹

  5. I am so very saddened for the loss of your beautiful wife. Thank you for continuing to share her with us. Understanding the realities of this stinkin’ disease while trying to maintain a semblance of hope is such a difficult challenge. Kindest regards to you and Uzma’s beautiful family.

  6. Thank you for this. Uzma taught us so much. We learn as oncologists to refer patients with stage four disease to palliative care early, but we don’t practice this often enough, perhaps because we want to fix things. We need to be mindful though about what all our interventions are doing for the well-being of our patients. Early referral makes the transition to hospice so much smoother than the abrupt change of goals which is the more common situation people find themselves in. Uzma you were so brave. Miss you.

    1. Thank you for acknowledging this. Yes, I agree that oncologists should be making early referral to palliative care. Having an already established relationship with palliative care physician when hospice begins can ease some of the emotional challenge of transition to hospice.

  7. Reblogged this on Apollo's Minion and commented:

    Uzma always believed that cancer patients should be in palliative medicine long before treatment is stopped. And she chose her palliative care path long before she was referred there.
    [Reblogging my post from her blog]

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